What is up with these Sickle Cell Patients?!

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Hi everyone,

So just a little background...just like the name says, I am a brand new nurse. Where I went to school and did my clinicals was a part of the country that didn't have much diversity, so I never ran into patients with Sickle Cell. Where I work now is a very busy, inner city teaching hospital with an abundance of patients with this diagnosis.

So anyway, after getting report for my sickle cell patients, I asked the reporting nurse and my preceptor for any tips or words of wisdom on how to provide the best care for my sickle cell patients. Their answers were, "Oh, you'll see. You'll learn quick..." They weren't kidding. I am not trying to categorize sickle cell patients, but the ones I've had are by far the worst, rudest, and ill-natured people I have ever run into in the health care setting.

For example, we have patient X who is an addict. This patient has a high dosage IV Dilaudid ordered PRN for pain every 3 hours and she has an alarm going off telling him/her when he/she is due. Patient is so rude to the nurses and aides. She gets her meds on time every time but complains about every thing and tries to get the staff pitted against each other with manipulation and lies. Patient X also keeps messing with her central line and being non-compliant with the plan of care. Patient Z is the same exact way, just add more cursing and attitude. Mind you, these patients are constantly on their phone and computers showing no outward signs of pain, no change in VS to signal pain, no anxiety, normal labs (minus what is expected for sickle cell). Patient Z goes as far as messing with her IV pump and changing drip settings and trying to be slick by stealing syringes and needles if he/she thinks the nurse is not watching him/her like a hawk. Both these patients are suspected of doing something with their central lines because they both have problems with them. If you ask any of the nurses, they all say the same thing. I feel terrible that the sickle patients are under this predetermined category in this setting, but they all seem to put themselves there.....rude, drug-seeking, addicts, manipulators, non-compliant, liars. The ones I have had will not hear you out no matter what angle you use. It's like their dx gives them an excuse to be horrible human beings...

What has your experience been? I know these patients are sick and in pain, but why act like nightmare people or nightmare patients?

Specializes in ED, ICU, PSYCH, PP, CEN.

The above posters all have really great thoughts on this, and I even learned a thing or two. Additionally I have to add, I have spent most of the last year not working because of the economy and a decrease use of travel and agency nurses. I now welcome every patient if only for the reason that it is job security for me. If and when you can't deal with a difficult pt then at least think of the job security they offer and appreciate them for that.

Specializes in MCH,NICU,NNsy,Educ,Village Nursing.

My beautiful eldest suffers from chronic pain. Many a time she would have seemed to be rude, demanding, etc. because she HURT!!! Other times, she would be on the computer, cell phone, planning life because, as she has said, she has to keep on keeping on and can't give up life just because she hurts. So, remember, pain can become normal. Anticipation is often the worse part of a negative experience. And, there but for the grace of God goes you/us....

2 Votes
Specializes in ICU, APHERESIS, IV THERAPY, ONCOLOGY, BC.
Thanks for all the replies so far.

I definitely went into this profession with an open heart and open mind. I've run into a handful of jaded nurses and I don't want to end up like that. As far as the above post, I did try that angle as well and I will always keep trying with all my future patients. I know this disease is terrible and debilitating and pain can make a lot of us act in crazy ways, but the reason I posted the question is because I was seeing a pattern.

Thanks for this, Your observations are very accurate. The pattern you described is the pattern of chronicity, both from a) the disease and complications and b) the negative effects of pain management which at present, has a greater success rate using narcotics, and consequently, the pattern of secondary effects. Pain is a powerful phenomena and has been described as " leaving a memory in the spinal cord, or perhaps, the subconscious. Neurological pain is similar, and nurses are often at a loss to understand if the patient is describing actual physical pain or the pain memory embedded in the neurological system. The approach is to recognize and honour the patient as they describe their pain and treat it as such. The overall approach is to respect and treat what the patient describes which is often why nurses become frustrated and angry when we might interpret this as treating a "habit" rather than an entrenched memory of pain, which to the patient remains real. There remains so much research and work about pain, effects from Sickle Cell and nursing knowledge and practice. :heartbeat Just a thought.

2 Votes

I am a nursing student, so I don't have the first hand experience everyone else has, but my program has ingrained in us that "pain is whatever the patient says it is." We are not to judge their pain level or how well/poorly they are dealing with it. SC patients have a shortened life expectancy, have sc crisis to worry about, and have very little control over their circumstances. My advice would be to imagine walking just one day in their shoes and understand that they are angry at their situation, not you. Treat them with patience and compassion no matter how much they test you. It may not be easy, but it's your job.

1 Votes
Specializes in chemical dependency detox/psych.

Although opiates are wonderful for pain relief, I think that it's sad how often people become addicted. And truly, who can blame them from wanting to escape from the pain? Have you tried gently talking to the patients that are messing with their lines? Confrontation does not always have to be a negative thing. I've seen people that have had someone gently call them on their behavior have a light-bulb moment--"Gee, I guess I'm not fooling anyone, after all."

Many times, I've been told by my patients (alcohol/drug addicts) that they wish I was their nurse all the time. Why? Because I treat them with kindness, despite their lashing out. I'm also not afraid to use therapeutic touch--too often, society treats people addicted to substances as modern-day lepers. One of my favorite things to do is to tuck them in like you would a small child. Find out their favorite type of juice and how they like it served (no ice, lots of ice, with a straw.) It's truly amazing the response that you might get for these type of small efforts to be kind. I know that in our increasingly high patient-loads, it can be hard to do this, but it pays off for the long-term, as you have a happier, less-grumpy and demanding patient. Give it a shot...you might be surprised.

I also labeled Sickle Cell Patients as being the worst but I've heard a few nurses state that renal patients are the worst. (mainly out of non-compliance, being rude & etc.)

Ive cared for a few sickle cell patients and although I know pain is subjective...I could tell when the patients were experiencing an acute attack.....

Nursing is a crazy field...For ex: You are not paid to think. do whatever them people want & do it with a smile on your face to improve patient satisfaction surveys... but ur license requires u to think in order to do your job well and without harming someone. If management could hire anyone off of the street without a license & pay them $8.00 an hr they would. In other words, get those patients their pain meds...Nursing judgement is used on an individual basis. All of your personal feelings, prejudice has to be pushed aside...

The mentality I have is "If its not going to kill you or hurt you..Whatever you want me to do (with in reason)...I am your servant until the end of this shift.

Easy patients...forget prn principle...write the times out on your brain sheet & have it ready as if it were scheduled...

Specializes in ICU, APHERESIS, IV THERAPY, ONCOLOGY, BC.
Perhaps patient X is physically dependent upon pain medicine. Or perhaps patient X is addicted to pain relief.

It sounds like perhaps your nursing education was lacking in one small point. People who have chronic, debilitating pain often no longer show ANY outward signs of pain, particularly with regard to vital signs. Over time, their bodies compensate and their autonomic nervous systems no longer set off a catecholamine response to pain. Do NOT assume that your sickle cell patients are not experiencing pain simply because their vital signs are stable or they have managed to distract themselves from it for brief periods.

Have you ever experienced severe, chronic, unrelenting pain for years on end? I think it could definitely sour my disposition, especially if the people who are supposed to understand my condition and show compassion for it treat me as a "liar," "addict," and "drug-seeking." I'd also probably be drug seeking as well if these same caregivers denied me pain relief because of their prejudices and preconceived notions about my condition.

Please give this some thought-don't let hardened, beaten down nurses infect your good will and ability to help your patients who are living with a condition which is often almost unbearable.

Don't take your patients' bitterness personally. Understand that they are likely projecting their frustrations about their situation on you, but it doesn't actually have anything to do with you.

Just to add, a nursing colleague and friend described her family member's illness. Chronic illness and chronic pain.

She stated that he grew very quiet for many years until he passed away. As she suffers from what I suspect will also be a chronic pain issue (genetically related) , she said to me that now she knew why he was so quiet. She is not treated with narcotics yet, but the internal battle in chronic pain is an exhausting one, moreso when other physical conditions eg. respiratory illnesses or COPD, do not allow administration of narcotics which can suppress the respiratory system. A complex, thought provoking and sorrowful condition.:nurse:

Specializes in Med-Surg, Psych, Tele, ICU.

You somehow have forgotten that taking care of the patient is your job...and all that they need. Their pain is real, and it is not up to you to judge them. They are in severe pain, and require their pain meds around the clock. Please don't let other nurses' judgemental and pious attitudes rub off on you.

1 Votes
Specializes in ER.

I don't work with "Sicklers" much where I am currently living, but when I lived in N.C., there were the same 4 or 5 who would come into my local ER. Other than being very specific about the Dilaudid dosage and where to find a vein, they were great people. All of them. They were grateful and always understanding. Of course, their disease means pain for them, which will eventually lead down a path of narcotic abuse for most of them, unfortunately. What other option is there? They have pain. Microvasculature oxygen deprivation leads to pain, very real pain.

Just as there are other patients out there that are manipulative, lying, or rude, they exist within the person, not within the disease.

Ease up folks. This is new for the OP. Stop your nitpicking.

The OP herself mentioned that this is new to her. She's learning. I ran into several people in nursing school who grew up in a white bread world. Yes, even older nursing students. I was a bit shocked as my life hasn't been sheltered, but alas it happens. You live and you learn, the OP is experiencing new people, and new things. And, BTW, not all SC patients are angels - newsflash.

I remember a fellow student (in her late 30's) coming up to me during clinical and commenting that she thought her patient was of a certain religion, and she knew this because he mentioned a certain holiday that was coming up. I paused, and almost laughed as I looked into her seemingly excited eyes. She had innocently thought that this was an interesting find!!!! I was wondering if she was a sort of intolerant person, but, I realized that where she lived, just about everybody was the same race, religion. She was genuine in her comment, she had just never met a jewish person before, never had been out of her little town, never been to the big city that was only like 2 hours from her home.

It's not all bad, people. It's running into things that are so different than you know, and so, there's going to be some stumbling around.

1 Votes
Specializes in ER.
i agree, tough population to deal with.

it's my belief that some are actual addicts, whereas many others have acquired their defenses towards those who treat them presumptuously and contemptuously.

and while they may be managed with their pain crises, so many fear the onset of another...

thus, the anxiety you note, when demanding their next dose.

i'm curious though...

when you state their labs are normal, except for what is expected in sc...

how do you suppose anemia and vaso-occlusion presents?

do you think there'd be pain? ms changes (r/t hypoxia)?

and again, all the psych factors that come along with chronic disease.

i find that reassurance and limit-setting, works well.

the pt needs and wants to trust you, the nurse.

if they feel their needs will be met, it makes for a smoother, more therapeutic relationship.

once they believe you'll give them their meds w/o judgment, you then can tell them to knock their other crap off.

please, be patient.

it sucks to be in crisis, and the anticipation alone, is enough to set us all off.

leslie

great info, Leslie. I always found that these sickle cell patients that frequently came in that I would take care of, then would want me as their nurse. They begin to feel trust in you as their nurse when they came in next time - you know where to get their line, you get their pain, you understand they need pain meds and hydration to get over the hump. Understanding really goes a long way.

Looking back on my original comment I now realize it can seem that I was being quite blunt- that was not my intention.

I meant just what I said, the patient's are dealing with chronic pain, and pain changes people! Unfortunately they have a disease process that is managed with opioid narcotics, which we all know have dependence issues.

It is possible that your patients are nice people that are dealing with a not-nice disease, and that causes them to handle their relationship with you in a very non-therapeutic manor (especially since they perceive you as the gate-keeper to their pain relief!)

Of course it is also possible that you happened to have a group of buttholes with the same dx!

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